Re: Insertion of growth rod
There was not really a programme of aftercare from GOSH. The physios there were great and made sure that Oliver could walk a little in the brace before leaving and helping him to get in and out of bed. Lisa was great and arrange the brace and made sure it was correct before we left. The OT came round and showed us how to use the bath board and walk up and down the stairs. We were in GOS for nine days but he did not get out of bed until day five. The muscles in Olivers legs were very weak so he was not able to walk very well. Mr Tcuker thought that Oliver might have to be in a spicer brace which means that the legs are fixed, this would have meant that Oliver would have been bed bound for the full three months recovery so I was keen to have his bedroom ready for this. Tucker would not decide until during surgery and as we were due to leave GOS on 23rd December it was important we were ready for any outcome. In the end he was lucky just to have the spinal brace so he was able to use his legs. The equipment we had at home was a medical bed that could be lowed and raised, a bath board, wheelchair (until Oliver could walk better) a brace of course, a perching stool for the table, a special toilet which meant he didnt sit too low, a hospital table and a grabber to pick things up. The community OT (through children services) arranged for this to be delivered just before we came back from GOS. We did have the surgery privately and I know this makes a difference to what GOS will offer afterwards (very little). As this is our second time in just under two years I was a bit more savvy on what I knew I would need in place. As I said, the LEA sorted the home school and there should be someone working during half term. Oliver had a spinal fusion in August 08 but the metal work broke and he has been in a lot of pain for the last eighteen months whilst they did many scans and bones scans deciding on the next course of action and his posture is very poor which has a huge impact on his life. The second surgery in December seems to be going well but this will not be confirmed until he has his CT scan at the end of May. I wish I had found Tucker the first time around as I have only heard great things about him. Panos (the greek chap) was lovely while we were is GOS. If you have good GP then I would suggest asking them to make arrangements as well to take some of the stress away from you. The first part after surgery is tough and I understand that Jessie has already had a very hard time (and you guys) but it does get easier week by week. We are now 10 weeks today post op and most of the equipment is out of the house, life is slowly returning to normal and Oliver is due to return to school part time next week. He has been at home for the last four months so this is a big step. We know it will be a year before life is totally normal but I am feeling positive. Deborah x
Mummy to Oliver aged 10. Failed spinal fusion at Standmore 09 second surgery on 15th Dec 10 at GOS with Mr. Tucker.